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How to support a bmt patient
My husband had a transplant in 2007,he was diagnosed with aplastic anaemia in June,just one week before our daughter's wedding .
Transplant took place in October.
We lived an hour's drive from the hospital and I spent every day there , usually from 10-9 and then,when he was going through transplant,I moved into a rented apartment for the duration .
I didn't want to be so far away incase things went wrong and it took me an hour to get there.
I tried from the very start to appear cheery for him,I knew that I needed to keep his spirits up as much as possible.
Difficult to do,sometimes,when your heart is breaking.
I remember getting out of the lift in the hospital one morning and saying 'show time ' to myself as I had to put my cheery face on when inside I was far from cheery.
I dressed up,jeans were banned for the duration,hair ,makeup,the lot!
Silly,I know ,but I was trying to keep my man alive and make him want to live.
Endured hours of just sitting there,if he was feeling poorly and not wanting to talk.counting the number of holes in the ceiling tiles!
I knew that if the worst happened ,I didn't want to feel that there was more I could have done,I needed to do this for myself as much as him.
I watched over him , telling staff off if I needed to,occasionally they didn't gown up or missed giving him his cyclosporine , especially banking staff.
I was known as the Rottweiler , jokingly,I think, but I didn't care.
My mission was to keep him alive.
And I did! It worked ! He made it !
I know that you who have been through it have had a really tough time but the people who love you,who care for you ,are hurting too. Just in a different way.
Transplant took place in October.
We lived an hour's drive from the hospital and I spent every day there , usually from 10-9 and then,when he was going through transplant,I moved into a rented apartment for the duration .
I didn't want to be so far away incase things went wrong and it took me an hour to get there.
I tried from the very start to appear cheery for him,I knew that I needed to keep his spirits up as much as possible.
Difficult to do,sometimes,when your heart is breaking.
I remember getting out of the lift in the hospital one morning and saying 'show time ' to myself as I had to put my cheery face on when inside I was far from cheery.
I dressed up,jeans were banned for the duration,hair ,makeup,the lot!
Silly,I know ,but I was trying to keep my man alive and make him want to live.
Endured hours of just sitting there,if he was feeling poorly and not wanting to talk.counting the number of holes in the ceiling tiles!
I knew that if the worst happened ,I didn't want to feel that there was more I could have done,I needed to do this for myself as much as him.
I watched over him , telling staff off if I needed to,occasionally they didn't gown up or missed giving him his cyclosporine , especially banking staff.
I was known as the Rottweiler , jokingly,I think, but I didn't care.
My mission was to keep him alive.
And I did! It worked ! He made it !
I know that you who have been through it have had a really tough time but the people who love you,who care for you ,are hurting too. Just in a different way.
Comments
My wife and I appreciate your experience above,it brought back very similar memories which were more memorable to her than me! I can't have been very good company.
For me after a few days of conditioning I didn't take much in at all. But for my wife nothing else mattered other than visiting, like you from early morning to late into the evening, then either my son, daughter or son in law would call in to take my wife home. I was conscious of the effect it was having on those around me,but they just got on with it.
We were lucky that we lived less than 3 miles away, Mary used to tell me about the chap in the room opposite, he came from North Wales about 70 miles away, his wife wasn't able to visit every day but Mary used to have a chat to him through a Perspex door . My only contact with him was a wave during the day, I met him later at outpatients and we got on like old friends all from a wave.
The hospital had a couple of coffee shops and a restauraunt , and the transplant unit had a good visitors rooms with drinks etc. Mary was also offered complementary therapies which helped with the stress and was a welcome distraction,she reminds me that she refused the offer on transplant day.
The quiet time for me was when the visitors had gone and the evening staff came on duty, the unit took on a bit of a hush.
Your counting holes in the ceiling reminds me that I used to count screw heads on the fittings in the room, I remember there were 32!
Peter
I don't know whether it would have been better had it been different and I'd seen my wife and boys each day, but for me I didn't want my treatment to disrupt their normal life as best I could, and wanted them to stick to the routine to reduce the impact it had on them.
Anthony Nolan has new website information for people supporting someone during a transplant. It's designed for partners and family members of adults having a BMT and includes information about common feelings, what to expect and what helps. We produced it with partners and family members as well as psycho-oncology experts. I hope you find it useful - let us know what you think.
http://www.anthonynolan.org/patients-and-families/having-transplant/looking-after-someone-whos-having-transplant
Amy